An implementation model for managing cloud-based longitudinal care plans for children with medical complexity

Abstract

Objective We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). Materials and Methods We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. Results We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. Discussion These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act–compliant cloud computing technologies to support families and providers in comanaging health information for CMC. Conclusions Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.

A Study of Cloud-Based Remote Clinical Care Technology

“…Some scholars, on the other hand, suggest the establishment of specialized hybrid clouds, such as the establishment of an advanced 3D analysis master-slave system integrated with cloud computing for cardiovascular image database, which helps clinicians to evaluate the surgical outcome during endoluminal aortic valve replacement [ 12 ]. The establishment of a cloud computing platform also helps medical diagnosis, such as for lung nodules, by storing huge amounts of relevant medical data in the cloud platform, so that clinicians can quickly and accurately make a diagnosis by comparing and referring to existing databases through cloud computing.…”

“…Some scholars, on the other hand, suggest the establishment of specialized hybrid clouds, such as the establishment of an advanced 3D analysis master-slave system integrated with cloud computing for cardiovascular image database, which helps clinicians to evaluate the surgical outcome during endoluminal aortic valve replacement [12].…”

Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications

“…Looking closely at impact, most of the studies in this review focused on the need for coordination and followup. Wang et al reported that a model used through the patients' portals helped caregivers be active participants in the care of the CMC by sharing care coordination responsibilities with the "core team" composed of clinicians and care coordinators (33). The model shares reminders and notifications for follow-up and allows caregivers to enter information about the child's health situation to facilitate the team's access to information.…”

“…The model shares reminders and notifications for follow-up and allows caregivers to enter information about the child's health situation to facilitate the team's access to information. It also allows them to be integral partners in the care team, resulting in a system in which "care is happening with them, not to them" (33). The caregivers' need to receive reminders and track health data was also shown by Cheng et al suggesting mobile health as a solution for coordination (32).…”

“…Finally, technology may facilitate some tasks for caregivers; it is noteworthy that it may add more burden to the providers and more workload to what they already have. Some providers complained about the extra burden that the consumer informatics added to their workload and the trustworthiness of the information shared by the nonhealthcare providers (33).…”